Book Review: “My Imaginary Illness” by Chloe G. K. Atkins 5/22/11

Imagine this situation: you are a young person of 20 and you have started experiencing increasing symptoms of weakness, fatigue, and paralysis. The symptoms are periodic, not consistent. While the symptoms come and go, they can be so severe that you have almost died on a number of occasions. You have lived through times when you could not eat and you could barely breathe. You have been on and off life support. However, your doctors cannot find anything wrong with you. They have run all possible tests and they have no explanation or diagnosis for your condition. The doctors think the illness is in your head.

This is the story that Chloe Atkins describes in her memoir, “My Imaginary Illness”. Having lived through years of medical hell, she achieves some measure of justice and payback by describing her medical experience. The book is an important contribution about a common but overlooked problem: how we treat individuals who suffer from medical conditions that cannot be diagnosed.

Atkins shows that all too often such individuals are treated with hostility by the medical world. They are blamed for their illness. Ironically, as Atkins’ medical condition worsened, she became more vilified by doctors. She points out how the medical world’s response to her was largely to assume she was a con artist out for some type of secondary gain. They could not explain her so the problem had to be her.

For over 10 years, Atkins’ condition was dire. At points, she became quadriplegic. Because her stomach could not absorb nutrients, she required intravenous feeding. She was bagged and ventilated repeatedly during the course of her illness. Still, she was treated as a psychosomatic head case patient and a black sheep. She had a medical chart that read like a rap sheet. Her reputation preceded her and her prior medical chart history colored perceptions of her illness when she needed to seek out care in new medical settings. It was so hard for Atkins that she seriously considered suicide rather than having to deal with yet another hostile medical establishment.

Fortunately though, there were some physicians, nurses, and therapists who were not so ready to condemn. While Atkins did not perfectly fit diagnostic criteria for a rare illness, myasthenia gravis (MG), she did have an atypical presentation of that illness. She got remarkably better when she finally started receiving MG treatment from her neurologist.

The book raises good questions about how the medical world treats people who are difficult to diagnose. Why are doctors so quick to judge negatively? Why the intolerance for ambiguity? Why are doctors so ready to write off a patient as draining precious medical resources when that person has an unusual or highly complex problem that may be poorly understood?

If an illness is perceived as functional, not organic, the ill person is often seen by doctors as a faker. Atkins shows how doctors who believed she was ill were ridiculed by senior members of her medical team. With technology allowing the sharing of much more medical history (a good thing and potentially very helpful), extensive chart misinformation can lead essentially to slander of a difficult patient.

The book raises other good points about our health care system. There is an expectation, almost a conceit, that the medical world has an answer for everything. Atkins’ book shows how untrue that is and it implicitly makes the point that there is still much that cannot be explained. The book is a reminder to place our view of illness into a historical perspective. Medical care in 2011 has reached a certain plateau in its dynamic evolution. It is not what it was in 1950 or 1850 and it is not what it will be in 2100 (assuming we as a species make it that far).

Medical care takes place in a 2011 social, political, and economic context. What we see as “the norm” is the product of a confluence of factors that includes limited financial resources and our largely private market system. While many tout quality of care and say our health care system is the best in the world, Atkins shows how dysfunctional care can become when you toss together ill-defined symptoms, troubled family situations and perceived non-compliance with treatment.

The last part of Atkins’ book is a critical commentary on her care written by a psychiatry professor, Brian David Hodges M.D. As an example of the historical nature of medicine, Dr. Hodges recalls a poster from the 1950’s picturing a doctor promoting a brand of cigarettes. The Hodges section serves as as an analytical counterpoint to Atkins’ narrative.

Having had much recent personal family experience over the last two years with the health care system, I do have to say that a critical stance toward quality of care is well-justified. The succession of treating doctors with seemingly no continuity of care; the objectification of patients who are scrutinized at a distance by a medical herd giving their medical gaze; and the overall dehumanization of patients with a failure to see those patients as alive, aware, emotional, needy creatures – all these contribute to a highly alienated situation for a patient.

Both my parents died in a hospital. While they both lived long lives, I do not feel good about the circumstances of their death. We never got a diagnosis about what was wrong with my dad until after he died. That might have been okay but doctors came and went like ships passing in the night. Communication was pitiful although my family members were trying to find out what was happening. Being there, I could not say my dad had a doctor, just a collection of medical personnel none of whom appeared to spend any time with him. My dad went out in the usual hooked-up-to-machines way we die.

My mom is another story. I was not physically present at the time of her death but I do feel bad care helped to kill her. I learned about her experience from my brother Rob. My mom was overmedicated and severely depressed. I have no way of knowing but I suspect her medications were bungled. For weeks her medications were being adjusted by a variety of doctors with god only knows how much familiarity with her chart. I had seen my mom for a few days two weeks before she died. She seemed improved at the time and I thought she might go home soon. She had spent the previous four months either in rehab or at hospitals with a brief stint at home. She also had no continuity of care I could ascertain. At the end her medical problems included congestive heart failure and diabetes. She had been on Prednisone and insulin. Ironically, my mom used to say that she believed mismanagement of her mom’s medications had killed her.

Atkins’ book has particular relevance from a legal standpoint. I would say it is hardly unusual to find claimants who present with both subjective complaints of pain and no or little objective evidence to support the degree of impairment claimed. As someone with past experience representing disability claimants and with current experience evaluating claims, I would note such a circumstance can provoke a wide array of responses.

“My Imaginary Illness” is, in effect, a brief supporting open-mindedness, tolerance for uncertainty and ambiguity , empathy, curiosity, and respect for the dignity of the claimant. It is a corrective to the world-weary, cynical perspective that automatically assumes subjective pain claimants are malingerers. Whether you are a doctor, a lawyer, a judge or a consumer of health care, I would say “Read this book.”